It has been almost 3 months since I've posted anything on my blog. So much about this blog reminds me of Abbey's leukemia so I have gone back and forth with whether or not to continue using it since we have done our best to move past that chapter in our lives. These past several weeks have been crazy though and I wanted to update about all that has happened as I know we have family and friends that know bits and pieces of what has been going on with Micah and this is a place where people know to go.
I am able to write about these past 4 weeks now since we are on this end of it. I have struggled this past month in a way that I don't know I've ever struggled in my life. Part of me shut down and wanted to crawl in a hole as what I am about to tell you unfolded. On November 8th Micah was sick. He had actually been sick for 4 days and was having on and off stomach pain and vomiting. Not a big deal for a three year old, but this was not the first time this had happened with him. He actually had many bouts of these same symptoms for the past couple years. We had taken him to the pediatrician many times in the past and even the ER on four occasions because we felt like it was really weird that he had these reoccuring stomach issues and no one else ever got the bug. At times the pain seemed so intense and those are the times that we rushed him to the ER, thinking something else was going on. Each time he was checked out by a doctor, they would say that he had a stomach virus that needed to run it's course. He even had a few xrays and ultrasounds over the years and each time they said everything looked normal. Sure enough he would always get past it, for it to come again at a later date.
It's no secret if you know me that I tend to be on the very cautious side when it comes to my kids health. Abbey's leukemia was missed for 2 weeks by our pediatrician at the time so thankfully my persistence (craziness at the time) led to her diagnosis. I have struggled since then to know if I'm over-reacting with my kids when they aren't feeling good. I have told myself in the past that nothing serious could be wrong with another one of our children since we already had a child with a huge illness. It almost excused us from health issues in the future if that makes any sense at all. Yet there were many times with Micah that I really felt like something more was wrong with him then a virus.
So back to what happened.... On November 8th he had been again having stomach pain on and off with vomiting that would come and go over those days. That night I again was feeling like I wanted to take him to the ER. Jim is definitely more on the side of wait and see, but that night he agreed that he needed to be looked at right away. I packed him in the car and off to the ER we were while Jim stayed home with the rest of the kids. The whole way there I went back and forth in my mind, feeling like I was again over-reacting and should just go home and let this pass like it did every time in the past.
To make a very long story short, after doing an xray, ultrasound and ct scan on his stomach, they saw something suspicious. They said that it was hard to see exactly what it was, but it looked like some sort of mass by his intestines. We were transported by ambulance to Cleveland Clinic downtown where more tests were done. After several hours of tests, a surgeon came in the room and told us that they needed to take Micah into surgery immediately to see exactly what was going on in there. Have you heard of exploratory surgery? That's what they needed to do on my 3 year old baby. Scary to say the least. Jim still was not at the hospital as he was home taking care of the other kids. My mom was there with Micah and I, but here I was in this room getting tons of information thrown at me and having to sign a paper to take him in to cut his stomach open to see what was going on in there. The surgeon called Jim on the phone to tell him what was going on (there was no way I could relay it all to him) and the one thing I remember from that conversation (it was on speaker phone) was Jim asking the surgeon if this was a routine surgery. The surgeon then said "no". It was all unbelievable and very scary.
Micah had been throwing up on and off all day and as they wheeled him back for surgery he was throwing up. We were told that he would be intabated and the risks with the state that he was in. They said he would be taken to the PICU overnight to be monitored after surgery. The next 4 hours were almost unbearable. I had to make myself breathe as we waited for someone to come out and tell us what was going on. It was all happening so fast and my mind was spiraling to the worst. I still can't believe I didn't just die while I waited.
After 4 hours, the nurse practitioner came out to tell us that he did very well through surgery. His vitals were rock solid and he came through with no problem. The surgeon followed her out to tell us what he found. Micah had a cyst, larger then an orange entangled in a section of his intestines. He removed the cyst and 5 inches of his intestines and re-connected his healthy intestines on each side.
It was going to be a hard recovery as he would have to heal inside and out. His belly was cut up and down and the incision was significant. When we saw Micah he looked better then I expected. He had tons of tubes coming out of him, but he didn't have to go to the PICU because of how well he did in surgery. That was huge for me because it was beyond scary to think that it was that serious that he was going to have to be in the PICU. He had an epidural for 5 days with pain medication automatically being given every hour to manage his pain. He had an NG tube, catheter, iv's, and a drainage tube coming out of his belly. We ended up being in the hospital for 9 days. He couldn't eat anything for 5 days (not even ice chips) because his bowels had to "wake up" and start working again after the surgery. They needed to know that things were moving down before they would give him anything, otherwise it would have just come up and they obviously didn't want that. He needed to pass gas or poop before they would even allow him ice chips. The first couple days he was so out of it that the food thing wasn't an issue, but as the days went on and he started feeling a little better, he was starving and begging for food. It was heartbreaking. By day 5 he started passing gas (we were celebrating and soooo excited once he started tooting and pooping!) and slowly started to eat again. They started taking some of the tubes out that same day and things started to look up.
I didn't take many pictures in the hospital. These were from day 5 when he was allowed to start eating a little and the tubes started to come out.
On day 9 we came home. He had to come home with the drainage tube (coming for the surgery site). He was still having a lot of drainage and it needed to come down before they removed it. I had to empty it in the morning and night and record what was coming out. The drainage finally did come down and after him having it in for 3 weeks it finally did come out.
He is doing well. It has been a crazy 4 weeks and I wouldn't want to go back even a minute at this point. He is on a very strict diet (10 grams of fat or less a day), which has been hard. He's hungry all the time and never seems satisfied, but he's accepting it much better then I expected him to. He is pooping normally and everything is working the way that it should be. This poor kid has been living with his bowels pulled so tight around this cyst. The doctor explained that at times the intestines would be pulled tight and when food was trying to pass through it would be extremely painful for him. Other times something would move a little and the food could pass through easier. It's so hard to think about what was being missed for so long and what he was going through. I'm sure I don't have to tell you this, but I am beyond upset that this had been missed for so long. I don't know where to go from here as far as Pediatricians, but that's a whole other story.
We have been going weekly downtown for them to do an ultrasound on his belly and they will continue to follow him to make sure everything is ok. He shouldn't have issues from this point on, but since this was a rare thing going on in there they will watch him to make sure things continue to work as they should. We are still learning new things about it each time we go and trying to understand why and how and all those questions.
Micah has been very into super heros. He has bounced back quickly from all he's been through - way quicker then Jim and I!!
We are looking forward to an uneventful Christmas. As of today, this very second, everyone is healthy. I am still trying to make sense of all of this. I do know and believe that God has a plan for our family and continue to trust whatever that is. I would by lying though if I didn't say that I'm tired and long for normalcy and good health for all of us.
Thank you for checking in on us! Everyone else here is doing well. The 9 days being away were hard for all of us, but our time since Micah and I got home from the hospital has been all the more sweeter as we've cherished being together and everyone feeling good. We decorated our house with TONS of lights and decorations this year and are more excited then ever for Christmas! I will post some pics of everyone else soon :).